What’s care got to do with it?

I haven’t posted anything here for a while. But it’s not because I didn’t have anything to say. It’s because I’ve been trying to practice what I preach.

I spend the vast majority of my professional life talking about care – who gets it, who doesn’t, why it’s important, what happens when there’s not enough, and what happens when there’s too much. And although my research generally focuses on care for others, this year I turned my attention to self-care. Because the great irony of doing good research on the care of others, is that it often comes at the expense of caring for yourself.

Co-written with my Australian colleagues Sarah Pinto and Sharon McDonough, my latest paper explores the the importance of self-care for academics. It is a call-to-arms for academics who’ve neglected themselves in the pursuit of their work and a critique of the neoliberal systems that demand this kind of self-neglect. It is a to-do list for rediscovering self-care and a reminder that resistance comes in many forms. It’s also a poem. Because why the heck not!

You can read it here, or contact me for a copy. And then forgive me for not posting. I’ve been doing some much needed self-care.

And the beat goes on

The findings from my first collaboration with European colleagues were published this week. This is a significant milestone for me, because it’s exactly the kind of collaborative, international research I was pursuing when I packed up my life and moved to the UK just over a year ago. More importantly, however, it’s a significant contribution to a growing body of research on suicide and homicide risk in people caring for family members with dementia.

My previous research showed that 1 in 6 carers had contemplated suicide in the previous twelve months, that only half of them had ever told anyone they felt this way, and that 20% of them were likely to attempt suicide in the future. This research also found no difference in the rate of suicidal thinking experienced by carers supporting a person with dementia at home, carers supporting a person with dementia in a nursing home, and carers who had been recently bereaved. These were ground-breaking findings and they generated significant interest from the community, the media, playwrights, and other researchers. But there was still so much we needed to understand.

In particular, the research was cross-sectional, so we were only capturing suicidal thoughts at one point in time. Consequently, we didn’t know how thoughts of suicide changed over time and whether carers who thought about suicide after the person with dementia moved into care, or after they died, had also thought about it while caring at home.

This new research addresses that issue. The article has been published ‘open access’, which means you can read the entire thing here for free, but to summarise briefly:

  • The study followed almost 200 carers in the Netherlands for two years, none of whom had depression or anxiety at baseline
  • Over the 2 year period, 40% of carers developed depression and were assessed for thoughts of suicide
  • 12% reported thoughts of suicide, with one third of those reporting suicidal thoughts at multiple time points
  • Thoughts of suicide were seen in various patterns, including only before the person with dementia was admitted to a nursing home, before and after the person was admitted to a nursing home, only after the person was admitted to a nursing home, and after the person with dementia died.

These findings support my previous research and show the incredible toll that caring can take, particularly at key transition points such as institutionalisation and death.

What they also show is that thoughts of suicide are not unique to Australian carers, but rather appear to transcend social, cultural, and political boundaries. Although more research is required to understand how the health and social care policies of different countries might influence suicidal thinking, this is another important step toward understanding and preventing suicide-related thoughts and behaviours in family carers.

It is heartbreaking to do research that shows, time after time, how little the world cares about carers. They are the invisible scaffolding that holds up every part of our society and our communities would crumble without them. This research is only a small contribution to efforts to recognise and support the wonderful work of family carers, but, added to my other work and that of my colleagues around the world, I hope it is a meaningful one.

As ever, nothing good is done alone. I am indebted to Dr Karlijn Joling, Professor Cees Hertogh, and Professor Hein van Hout, who conducted the research that provided data for this study. I am particularly grateful to Karlijn, who led the analysis of the data and was a joy to write with. Karlijn, Cees, and Hein share my passion for research that cares and I look forward to our continued collaborationsl

 

Kapow!

Last year the lovely folks at Australian Ageing Agenda asked me to write an Opinion piece about family care. As well as advocating for carers, I used the opportunity to confess to the world my deep and abiding love for the Batman films. After originally appearing in the AAA magazine, the piece has now been posted online and you can read all about the wonderful work that carers do (and my shameful secret!) here.

Non-Required Reading

When I was traveling in the US last year I picked up The Best American Non-Required Reading 2014. I love compilation books, but it was the phrase ‘non-required’ in the title of this one that really piqued my interest.

I’ve long believed that (a) great writers are great readers and (b) great reads are rarely found in academic journals. And, with this in mind, I’ve often fantasised about creating a reading list for PhD students that would improve their academic writing by introducing them to a range of quality fiction, narrative non-fiction, essays, feature writing, and poetry.

Of course some academics would argue that if a PhD student has time to read for pleasure, they’re not working hard enough. But I think this is a dangerous attitude. Most PhD students struggle with writing and the majority of supervisors have neither the time nor the skills to offer meaningful guidance. Encouraging students to read widely and read well is a fast and effective way to improve their writing. It’s also a powerful way to promote the sort of work-life balance practices that are essential to surviving life as an academic! (And if that weren’t convincing enough, there’s also the fact that intellectual cross-pollination of exactly this sort has been responsible for some serious scientific breakthroughs!)

The only real problem I can see is how to narrow down the list. There are so many fantastic things to read and most PhDs only take three years. But I had a bit of time this week and I thought I’d at least have a go. So here, for your consideration, is my draft Non-Required Reading List for PhD Students.

Year One
Every Month: 4 articles of your choosing from LongReads, The Atlantic, or Mosaic
January: To Kill A Mockingbird by Harper Lee
February: Franklin and Eleanor: An Extraordinary Marriage by Hazel Rowley
March: Dept. of Speculation by Jenny Offill
April: Lullabies for Little Criminals by Heather O’Neill
May: The Best Australian Essays (your choice of year)
June: People of the Book by Geraldine Brooks
July: The Vulnerable Observer: Anthropology That Breaks Your Heart by Ruth Behar
August: Cloud Street by Tim Winton
September: Shakespeare on Love edited by Michael Kerrigan
October: Little Black Book of Stories by A.S. Byatt
November: Joe Cinque’s Consolation by Helen Garner
December: All Quiet on the Western Front by Erich Maria Remarque

Year Two
Every Month: 4 articles of your choosing from Long Reads, The Atlantic, or Mosaic
January: The Small Backs of Children by Lidia Yuknavitch
February: Tall Man: A Death in Aboriginal Australia by Chloe Hooper
March: Cutting For Stone by Abraham Verghese
April: An Opening: Twelve Love Stories About Art  by Stephanie Radok
May: My Age of Anxiety by Scott Stossel
June: A David Sedaris book of your choice
July: Electricity for Beginners by Michelle Dicinoski
August: On Beauty by Zadie Smith
September: The Best Australian Essays (your choice of year)
October: Extremely Loud and Incredibly Close by Jonathan Safran Foer
November: The Collected Stories by T. Coraghessan Boyle
December: All The Birds, Singing by Evie Wyld

Year Three
Every Month: 4 articles of your choice from LongReads, The Atlantic, or Mosaic
January: The Unspeakable: And Other Subjects of Discussion by Meghan Daum
February: Eucalyptus by Murray Bail
March: The Beginner’s Guide to Winning the Nobel Prize by Peter Doherty
April: The God of Small Things by Arundhati Roy
May: Out to Lunch by Andy Kissane
June: We Need To Talk About Kevin by Lionel Shriver
July: The Best Australian Essays (your choice of year)
August: The Collected Short Stories of Roald Dahl by Roald Dahl
September: The Amazing Adventures of Kavalier and Clay by Michael Chabon
October: The Mezzanine by Nicholson Baker
November: Nothing to Envy: Ordinary Lives in North Korea by Barbara Demick
December: Dear Committee Members by Julie Schumacher

Got other suggestions? Leave me a comment.

It’s Complicated

While conducting research on suicide risk in family carers of people with dementia, my colleagues and I received a note from a participant that said You asked if I wanted to kill myself, but you didn’t ask if I wanted to kill the person I’m caring for. Naturally this raised a lot of questions and concerns and we decided to embark on a study of homicidal ideation in family carers. The findings from that study were published this week and I thought I’d take the opportunity to share them here and discuss the implications.

Here’s a brief summary:

  • We interviewed 21 Australians providing care for a family member with dementia.
  • Two reported actively contemplating homicide while caring and four expressed a passive desire for the care recipient’s death.
  • When asked about homicide, four carers talked about euthanasia.
  • Thought of homicide and passive death wishes were the result of physical and psychological fatigue, an unwillingness to place the person with dementia into residential care, self-defence, isolation, and a sense of being trapped in the caring role.
  • Thoughts of euthanasia were framed in terms of compassion, quality of life, dignity and respect for the person with dementia.
  • None of the carers who had contemplated homicide or had passive death wishes had ever acted on their thoughts.
  • Those who spoke of euthanasia were frustrated at the lack of legal options, but adamant that they wouldn’t take matters into their own hands.
  • All the carers who reported homicidal thoughts or passive death wishes were women.
  • None of the carers who had contemplated homicide or had passive death wishes had ever shared their thoughts with anyone.

To our knowledge there has been no previous research on homicidal ideation in family carers. What previous research has shown, however, is that up to 40% of completed spousal homicide-suicides among older adults are perpetrated by someone caring for a partner with a long-term illness or disability. By asking carers about homicidal thoughts while they are caring, the current research allows us to better understand the factors that place people at risk and identify ways to prevent these sort of deaths in the future.

Although thoughts of homicide do not necessarily lead to homicidal behaviour, the fact that some carers are contemplating homicide is a cause for concern and reflects the high level of distress that many carers experience on a daily basis. Unfortunately, some people will be quick to use this work to shame carers who contemplate homicide. Although I don’t condone violence or abuse, I also don’t want to see carers vilified. The vast majority of carers are amazing people, doing an incredibly difficult job, with very little support. So let’s use this research to help them see that they’re not alone and help them find the support they need. Those on the frontline – GPs, social workers, nurses, pharmacists, aged care providers, and advocacy organisations – all have a part to play in identifying and supporting carers who are struggling. These are not easy conversations, but they are important ones.

I think it’s also important to recognise that these findings are indicative of a bigger social problem. It’s easy to think of dementia and caring as personal issues, but they are social, political, and economic issues. In Australia alone there are more than 300,000 people caring for family members with dementia and if they all stopped tomorrow, it would cost the government more than $30 billion a year to replace the care they provide. Carers make a significant social contribution, but much of the stress they experience stems directly from a lack of social, political, and economic support — delays in the dementia diagnosis, a lack of access to quality respite care, a lack of understanding from employers, and the challenges of navigating the aged care system, just to name a few. So while we must work to identify and support individual carers who are contemplating homicide, we must also take action at a higher level, advocating and agitating for a social, political, and economic framework that makes caring a less stressful and more sustainable experience.

The overlap between homicide and euthanasia in this study also highlights the need for a serious public conversation about the right to die with dignity.

As this research gets disseminated – particularly via the media – the findings may be taken out of context, oversimplified, or hijacked. But homicidal ideation in family carers is a complex phenomenon – it cannot be reduced to soundbites, it must not be used for political gain, and there is so much about it we still don’t understand. Ultimately I hope that this research will start important conversations about caring and its role in our society. I also hope it will lead to further research on homicidal ideation in carers (including quantitative studies, comparisons across countries, and research on people caring for family members with other illnesses and disabilities) and help to facilitate the social, political, and economic changes that are needed to better support people with dementia and their families.

If you’d like to read the full paper and have institutional access, please go to the journal website. If you don’t have access, please contact me for a copy.

If you or someone you know is contemplating homicide or suicide, or needs urgent support, please contact Lifeline on 13 11 14, The Suicide Call Back Service on 1300 659 467, or the crisis line in your area.

Caring ‘Til It Hurts

This piece, written by me, was originally published in the Australian Journal of Dementia Care (Volume 3, Issue 6, December 2014/January 2015, p33-34) under the title Caring ‘Til It Hurts: Suicide Risk in Family Carers. It was designed to introduce aged care staff, health professionals, and service providers to the issue of suicide risk in family carers and is reproduced here with permission. For ease of reading I have removed the references, but I am happy to provide them on request. 

 

The first thing I noticed about Ken* was his arms. Thick and tanned, they were the kind of arms that could carry you out of a burning building without breaking a sweat. Arms made strong by years of physical labour, first on the farm and then on the battlefield. Arms that now spent their days lifting. Lifting her in and out of the car, on and off the toilet, in and out of the bed they no longer shared. Always lifting.

As Ken and I spoke, I watched the arms. At first they were crossed firmly over his chest – the body trying to stop the man from giving away too many secrets. After a while the shoulders dropped and the arms uncrossed, but the hands remained firmly clasped – the body only prepared to meet the man halfway. But after two hours, the arms gave up. The man cried, the body shook, and the secrets were revealed.

****

More than 200,000 Australians currently identify themselves as the primary carer for a family member with dementia and one in four of them provide in excess of 40 hours care per week. As a result of the cognitive impairment and behavioural problems, caring for a person with dementia is acknowledged to be more demanding than caring for someone with a physical disability and this intense work can lead to physical and mental health problems. Rates of anxiety, depression, and hopelessness are all higher than average in family carers and pain, fatigue, and chronic health conditions are also common.

Although depression, anxiety, hopelessness, pain, and chronic disease all have been linked to suicide in the general population, until recently there had been no research on suicidal ideation or suicide risk in family carers.

This article provides an overview of research my team and I have recently conducted on suicide risk in family carers and provides practical suggestions to help staff in clinical and community practice identify and support carers at risk.

Why suicide? Why now?
Although academic research on the physical and emotional experiences of carers only dates back to the 1950s, Harriet Beecher Stowe and Louisa May Alcott were writing about the tribulations of caring in the 1800s and archeologists have found the remains of Neolithic adults who could not have survived childhood without dedicated family care. Caring is clearly not a new phenomenon and my colleagues and I were intrigued that suicide had not been the focus of more research.

In our careful searches of the academic literature we were able to find only one previous study of suicidal ideation in family carers of any sort (not just dementia). In 1997, Cynthia Rosengard and Susan Folkman reported that more than 50 per cent of gay men caring for a spouse with AIDS had contemplated suicide. Interestingly, experiences of suicidal ideation were unrelated to the carer’s own HIV status. The only other evidence we could find came from studies of homicide-suicides committed by older adults. Although homicide-suicides are rare, in those studies up to 50 per cent of homicide-suicides were committed by spousal carers, with approximately 20 per cent of those caring for a spouse with dementia.

What did we do? And what did we find?
We started our research by interviewing a small group of just nine carers (four men, five women). We wanted to get a sense of how many carers had contemplated suicide and the factors that might be associated with suicidal ideation, before we embarked on a larger project.

Four of the nine participants had contemplated suicide while caring for a person with dementia and Ken (referred to at the beginning of this article) was one of those four. For the other carers, suicide was a way to escape the relentless demands and overwhelming fatigue of caring (or, as one participant described it, “to get off the merry-go-round”). For Ken, it was about ensuring that his wife would always be well cared for. He said: “A couple of times there I thought about how I could get away with bumping myself off…because my insurance and all my stuff would’ve set my wife up forever.” Although none of the nine carers had attempted suicide, two had made preparations.

Our next study included 120 family carers who completed an anonymous survey about their health and well-being. When we analysed the data we found that one in four had contemplated suicide more than once in the previous 12 months. Of those who had contemplated suicide, only half had ever told someone and one-third said they were likely to attempt suicide in the future. When we compared those rates to population averages, we found that family carers were contemplating suicide at more than eight times the rate of the general population.

Which carers are at risk?
In our first study, there were three factors that appeared to put carers at risk of suicide: mental health problems prior to becoming a carer; physical health problems while caring; and intense conflict with family or professional care staff.

For the carers with pre-existing mental health problems, the long hours, demanding physical labour, and isolation of caring exacerbated their symptoms and made it difficult for them to cope with the challenges of caring or to seek help.

For those with physical health problems, suicidal thoughts cropped up when the condition was aggravated by the caring role, there was ongoing pain, and time for self-care was limited. For the carers with physical health problems, an inability to seek help (due to exhaustion) went hand-in-hand with an unwillingness to seek help for fear of being seen as incompetent. Finally, for those carers who faced intense interpersonal conflict, it was the resulting isolation, helplessness, and vulnerability that led to thoughts of suicide.

In our larger study, carers who had contemplated suicide reported more behavioural and psychological symptoms in the person with dementia and, for their part, stronger negative reactions to these symptoms. They were also less confident in their ability to access support services, less optimistic, and less satisfied with the social support they received. They had higher levels of burden, hopelessness, anxiety, and depression, and made greater use of dysfunctional coping strategies (like alcohol or drug use). When we put all these factors into a statistical model, depression was the only significant predictor of suicidal ideation.

What about resilience?
Our research revealed that one in four carers had contemplated suicide and this is certainly a finding that warrants serious concern. On the flipside though, three out of four carers had not contemplated suicide and by studying these carers we can identify the factors that promote resilience and develop targeted interventions to support carers at risk.

In our first study, the factors that fostered resilience were: the use of practical coping strategies; personal characteristics like determination and flexibility; social support; and faith.

Coping strategies such as seeking out information and support, maintaining hobbies, connecting with other carers, and using respite services all allowed carers to recharge their batteries and ameliorated the impact of caring on their physical and mental health.

Carers who could draw on internal reserves of compassion, determination, and flexibility were more able to accept the challenges of caring and responded more proactively to specific stressors.

Social support from family and service providers gave carers time to engage in self-care and the most resilient carers were those who could communicate assertively about the sort of support they needed.

Finally, faith provided carers with a framework for reflecting on their experiences, seeing the ‘bigger picture’, and recognising that the caring role had a purpose, was finite, and would eventually pass.

In our second study, the low rates of optimism, self-efficacy, and satisfaction among carers who had contemplated suicide suggest that these factors may also play a role in resilience.

What can you do?
Although our research is continuing, we now know that carers are indeed at risk of suicide and, as a community, we need to work to address this issue. Clinicians, allied health professionals, care workers, and service providers are ideally placed to identify and support carers at risk, but many are, understandably, apprehensive.

To ensure that clinical, community, and residential care staff can provide the best possible support, they need to know how to ask about suicide and where to refer carers at risk.

  • Living Works offers Applied Suicide Intervention and Skills Training (ASIST) courses all around the country and these two-day courses provide an excellent introduction to suicide and suicide prevention, including role-playing the difficult conversations. More information is available at: livingworks.com.au/Training-Programs.html
  • Carers in crisis should be referred to Lifeline or the Suicide Call Back Service. Lifeline (13 11 14) is a telephone support service that provides 24-hour, confidential, crisis counselling. The Suicide Call Back Service (1300 659 467) also provides 24-hour telephone counselling and offers six free follow-up sessions with the same counsellor, at any time that suits the caller.
  • Carers experiencing mental health problems should also be encouraged to talk to their GP, who may be able to provide a referral for subsidised sessions with a psychologist or psychiatrist.
  • Finally, health professionals, care workers, and service providers can also help to prevent carers ever reaching crisis point. As Ken’s case illustrates, a cup of tea and a listening ear can go a long way to making a carer feel valued and supported. Providing quality respite care, helping carers connect with services, and fostering a community of carers can also help to ease the load.

****

As Ken showed me to the door, I looked again at the arms. They were swinging gently by his sides, unburdened now of the story they had carried for so long.

*Not his real name.

Powerful Ageing

I was recently invited to be a guest on Adam Holcroft’s Dojo of Powerful Ageing Podcast. It was a wide-ranging conversation that covered everything from social media and dementia to hipsters and self-care. It was a real treat to talk to Adam and you can listen to the interview here (Note: It starts at 00:04:45)

Adam also creates a beautiful artwork to go with each podcast and I am completely in love with mine. It’s like Hemingway meets Logan’s Run, with a dash of Warhol, and it really captures who I am and what I do. Thanks Adam!

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